Oh wow, this is great - at least two mamas in this thread who had their HLHS babies in Portland. I'm actually going to OHSU. Legacy Emanuel was the first to give us a diagnosis, but I didn't like that the cardiologist we were seeing didn't really explain the severity of the condition and assumed many things: that I would be induced at 37 weeks, and have the baby at that hospital, and he would perform the surgery. DH and I prefer to have LOTS of information and make our own decisions.
So we'll be at OHSU/Doernbecher's, but we also have Children's Hospital in Boston and Stanford University on tap to give us 2nd and 3rd opinions. I just hit my EDD, so it could be any day now!
Also, regarding the cause ... for HLHS, they don't know what the cause is. Some suspect it's a random mutation of a gene. I don't imagine the likelihood of HLHS being hereditary is very high given that prior to the early 1980s it was 100% fatal. Kind of hard to pass on a "bad" gene if you don't live for more than a few days. But there are something like 3 dozen types of congenital heart defects, and they vary in severity and probably cause.
Neither hubby nor I have any known history of heart conditions in either of our families, and neither of us has any relatives who served in Vietnam or were exposed to Agent Orange. So in our case, it really does seem to be totally random. We were told our chances of having another HLHS baby was 20-25 times higher than the general population, but still only half a percent likely. I like to look at it this way: I'd probably have to have 199 more babies before having another with HLHS!